In the eye of the beholder

Webster women talk about the gift of sight

by Amanda Fanger

reporter@reporterandfarmer.com

November is Eye Donation Month, an annual event held to help raise awareness about cornea donation and transplantation. Last week, two Webster women who have both experienced a cornea transplant talked about their experiences and how being a recipient of their new organ has changed their lives.

The cornea is the transparent front part of the eye that covers the iris, pupil and anterior chamber and its main function is to refract light, focusing the majority of the light that enters the eye.

Marilyn DeSpiegler, a double-transplant recipient, noticed a lack of ability to focus, first in her left eye, and a few years later, in her right as well. After consulting with her optometrist, the 81-year-old was diagnosed with Fuch’s dystrophy, an inherited eye disease which results in the cell lining on the inner surface of the cornea to change and cause vision decline, and in some cases, leads to total blindness.

DeSpiegler’s first transplant was in 2014. She said the transplant went well and reported no notable issues with that procedure. A few years later, she began to notice trouble with vision in her right eye as well. Her initial surgery was put off first due to low platelet count in her pre-op blood work, then because of COVID-19. Finally, she was able to get her new cornea in July.

Megan Garry was a few weeks shy of 17 when a traumatic event necessitated a cornea transplant. The July 31, 2008 wind storm that hit Webster caused an object to hit and shatter her bedroom window which resulted in her left eye being damaged. Local medical professionals sent Garry, now 29, to seek advanced treatment in Sioux Falls. She said the glass had damaged not only her cornea but also her lens and the eye itself.

Garry said she was told there was a chance she would lose her eye completely from the event. However, through multiple surgeries, her eye was saved. When her doctors told her eventually that her cornea would need to be replaced through transplant, she said it took her some time to adjust to the idea.

“I had this feeling of, ‘Do I deserve this?’ Just knowing someone else would have to pass away for me to be able to see,” she commented. Now, she said, “Not a lot of days go by when I’m not fully aware of it but there’s always that gratefulness... Not a day goes by where I’m not thankful. I know how much it has impacted my life.”

DeSpiegler said she felt just fine with the thought of a transplant and added she never once had the thought of not having it done.

“It’s a gift. It’s just a miracle to me that I have two different people inside of me now,” DeSpiegler said. She described the feelings of joy when she was able to take her eye patch off several days after surgery and getting to look out the window of her home. “I had such excitement! I’m so grateful, so grateful, because I can see. I feel really, really blessed.”

Following their respective surgeries, both DeSpiegler and Garry went through periods of adjustment, getting used to their new corneas and working through depth perception issues.

Garry’s vision today is around 20-40 – while not perfect 20-20 vision, she said it’s “really, really good,” considering everything she’s been through. Not only did she have her cornea replaced but she also had to have cataract surgery and her lens was replaced with an artificial one which gives her a fixed focal length. She’s also had lasik surgery on her right eye to help compensate for the major adjustments in her left eye.

DeSpiegler said before surgery this year, her vision had degraded to 20-150, with glasses; now, her vision is at 20-30. She said she relied on various members of the community to come help her put in her daily steroid eye drops multiple times a day. Because she didn’t have depth perception, she worried she would end up poking herself in the eye and damaging her new cornea.

“This is a great community,” DeSpiegler said. “There was a good week of (different people) coming to help.”

Both Garry and DeSpiegler heralded becoming organ donors.

“Some people might think it’s gross or something,” Garry said. “That does a real big disservice to compassion itself. God forbid anything happen, but if the worst thing does happen... this is a gift that extends to their family and friends. Mine may not be a life and death, but its definitely changed my life. Becoming a donor is one of the most compassionate things you can do.”

There are an average of 40,000 corneal transplants performed in the United States each year, according to the National Eye Institute and the U.S. Government Information on Organ Donation and Transplantation showed there are over 109,000 men, women and children on the national transplant waiting list as of last month. Statistics from that same source showed 17 people die each day while waiting for an organ transplant and another person is added to the waiting list every nine minutes while only three in 1,000 people die in a way that allows for organ donations yet one person can donate up to eight lifesaving organs. According to organdonor.gov, there is no restriction on age to become a donor. To date, that website says the oldest donor in the U.S. was 93.

In her take-home instructions, DeSpiegler said she was given an address and a note that asked her to “please find it in your heart to write to this donor family.” She said she doesn’t know if she’ll ever hear back from them, but sent a letter to express how much this meant to her.